After our weekly family meeting, we let the kids pick a game each (and do everything we can to dissuade them from Mousetrap, because that game is torture for adults) and play. Zora chose the Dora Candy Land game, but since we only have one surviving original piece (Boots with Balloons) they raided the toy box to find other characters to play.

Zane chose Uno. (and the adults cheer!). Since both kids lack the hand size and motor planning that Uno often requires, I ran downstairs to my “don’t want to throw this away just in case I need it” pile and grabbed a piece of styrofoam. A few slices with a knife across the top and you have handy dandy card holders. I have seen these made out of those foam florist bricks wrapped in packing tape and it worked a little nicer, but this was successful, and FREE. (although the styrofoam snow was a tad annoying to me, it didn’t really bother anything). The original idea was passed on by a local OT designing something to hold cards for stroke patients. I thought it was pretty clever.

In OT today Zane took the “Oops” PEC card velcro’ed to the OT’s computer (he is working on typing) and put it upside down, then giggled and said “Oops!”

Which reminds me….

Last Saturday, at the ROCKO event, when they were playing outside a ball got stuck in a tree. Zane noticed it and Terese was trying to get him to have a conversation about the ball. He misinterpreted what she was saying, took a ball and walked to a shorter tree and proceeded to work to get it stuck in the tree too. She then had to tell him to not do that, and he turned to her and said “Ball stuck in tree all done?” Yes Zane, all done. Such a Zane-ism.

The trampoline has moved it’s way around our house. When we got it, we were in the little apartment and there was no choice but to put it in the family room. When we moved here, we put it in Zane’s room. Zane doesn’t go hide out in his room like he used to and I could tell he wasn’t getting the sensory input he needed to feel good (and was resistant to us asking him to go jump in his room for a bit), so we moved it back to the living room.

Now he is back to jumping when he needs to (like while waiting for Daddy to fix his video game) and is much happier. (well, except that Zora also wants to jump and that doesn’t thrill him)

Autism is caused by a ’supercharged’ mind, scientists claim Children who develop autism have “supercharged” brains that are so clever and sensitive that they make everyday experiences utterly overwhelming, new research claims.

By Richard Alleyne
Last Updated: 10:32PM BST 17 Sep 2008

According to a theory developed by Swiss neuroscientists, the condition is not caused by a brain deficiency but by a system overload which causes the world to seem frightening and overly intense.

Husband and wife team Kamila and Henry Markram of the Swiss Federal Institute of Technology in Lausanne, believe the idea could explain the erratic nature of the condition.

“Our hypothesis is that autistic people perceive, feel and remember too much,” Kamila Markram told the New Scientist.

Faced with this “intense world” , autistic infants withdraw, with serious consequences for their social and linguistic development, she added.

Repetitive behaviours such as rocking and head-banging, meanwhile, can be seen as an attempt to bring order and predictability to a “blaring world”.

Most of the theories surrounding autism involve the idea of an underperforming brain but the Markrams believe the opposite is true with the brain being “supercharged”.

Their research, which included studying their own son who is borderline autistic, is backed up by one of the most replicated findings in autism which is abnormal brain growth.

At birth the brains of autistic children are small or normal sized, but grow unusually quickly.

By age two to three, when symptoms of autism occur, their brain volume is roughly 10 per cent larger than average.

The Markrams believe that autistic children suffer from “hypermemory” which lock them into certain compulsive routines and develop their savant skills.

“They build very strong memories,” said Mrs Markram. “So strong that you establish a routine that you can’t undo: you are stuck on a track.”

Their theory chimes with the depiction of an autistic savant in the film Rain Man, starring Dustin Hoffman and Tom Cruise.

It also rings true with anecdotal evidence from autistic people.

“When I was younger, the school bell was like a dentist’s drill hitting a nerve,” said Temple Grandin, an animal scientist at Colorado State University in Fort Collins well known for being autistic.

“I think it’s difficult for people to imagine a reality where sounds hurt your ears and a fluorescent light is like a discotheque.”

Although I do conceed that this is probably not true for all autistic people, it certainly holds true to what I know about Zane. Instead of “not feeling emotion” (an autistic stereotype), he seems to over-feel them. He is often the embodiement of the emotional charge of the room. I also think that a big problem with eye contact and reading people’s emotions is that he is feeling how they actually feel, and it often conflicts with the social mask people are wearing and it’s confusing.

Zane is also hyperlexic and taught himself to read around two. By Zora’s age, he had been writing the alphabet for a while too. (she isn’t even close to writing the alphabet out). He also knew how to get around anyplace we had ever been before…inside stores, driving around, and made it clear from the backseat when he was unhappy with the route we were taking or if we missed the turn, even as a young toddler.

I know he is brilliant. It actually interferes with ST and OT if the person watching isn’t really sharp. This is why I like his current STs and the OT that I loved (and hope to have the car and the money to go back to soon.) This is also why I like the Clinical Educator so much at WSU… she is able to pick up on when he is just playing with the ST student and when he is actually not getting something…a very subtle thing, and you have to be able to see that he is smart to even be looking for it. I am so glad the next generation of STs are being taught to watch for this so well. It is really neat to see the creative problem solving, but can make planning for an activity to target a specific skill a lot of work. I think that is one of the biggest problems with people trying to educate Autistic kids, in the classroom or in specialized settings like ST and OT; you have to be really smart and good at what you are doing to be able to read these kids and know when they are BSing you. It is exhausting and intense at times. In a lot of classrooms, there are so many other things going on it makes it a lot harder to do this well. This is why it is so difficult to find good SpEd programs and why that is usually the main topic of conversation when two parents meet up.

Honestly, this is a large part of why we were so delayed in getting a diagnosis. I read what “autism” is supposed to be and, although the actions were the same, I interpreted the cause of them being almost exactly opposite of what they were saying and it took a while for me to accept that it was the actions that defined the diagnosis, not the root cause.

I could go on and on with antidotal stories that support this theory, but Zora is making it hard to type (and think), and I need to get back to real life.

Oh…and on a side note…ds’ head size has always been a little large, just like his dad’s. Finding hats that fit, especially as a baby when the sizes are more dramatically different, was always a challenge.

Good News!
For the first few weeks of his new job, Zach will have use of the company car. That way we have time to get together some money for a second car for the family. He has a small amount of retirement money that he will be able to access from the state job (they take money out of your check whether you want to or not for retirement, and since it is tied to the stock market, we are losing money every month at this point anyway, and it isn’t a large sum to begin with). Now that his last day has passed, we can either roll it into an IRA or take the money out. Considering we could replenish the amount in just a few months, and we need a car now, we are going to get a used car with it. (we get cars that are too old to get bank loans for).

The insurance drama
They changed the policy of how insurance is done at the school, so we won’t have insurance for the next two months. That really stinks. As it turns out, however, it wouldn’t matter for the therapies because our last therapy with the OT bounced because they only cover 30 sessions a year in combined ST and OT. So, it wouldn’t have been covered anyway. That means we can’t afford OT over the summer until the new insurance kicks in in August. If we have anything catastrophic happen in those 60 days, we can pay $2000 to Cobra and it will backdate to cover it. It is expensive, but at least it is something. It does mean I will have to cancel some dr. appointments for the summer, but I can reschedule them for fall when the new insurance kicks in.

I have a call in to the private place he gets ST to see if they will still cover us with financial aid or not. I also signed him up for a social skills camp taking place there for a week this summer, so that hangs in the balance too. The other place doesn’t take insurance, so it doesn’t affect there. (we are on financial aid there too)

eta: I talked to the insurance person at the private ST, and she thinks that we are fine…loss of insurance shouldn’t affect the financial aid contract. She did tell me to call the HR person at his new job and make sure we are still in the window for pre-existing condition covereage. We probably are, but if we aren’t, we will need to dig up the money to pay Cobra so there isn’t too long of a window. Between Zane and me, not covering pre-existing would be a serious, serious problem. I haven’t had any symptoms of Endo in a long, long time, but it is still pre-existing and might affect my ability to get a hysterectomy without a lot of hoops. (when I am done having kids, the sucker is coming out…I pay a heavy and painful price to maintain fertility, and if I was sure we were done, it would already be gone)

Prospective international travelers
We have to get passports (at least Zach does) because his company wants to send him to Germany this summer sometime. Hopefully after Aug. 1st so we don’t have to travel without insurance. Hopefully a little later too so that we can afford for me, and possibly Zane, to go with him. There is no way I am traveling with a two year old that will get nothing out of the trip but make everything ten times more difficult. If there is nobody to watch her, I would rather stay home than travel with her, even though it would be disappointing.

Plus, she isn’t vaxed yet, and I am not speeding up vaxes for that. We might get a tetanus this summer, but we want to wait until 3 and the blood-brain barrier is closed before getting the majority of the vaxes. (it closes sometime during this year). Zach and I will probably need boosters, but we think Zane has everything he would need to travel, unless they require the Chicken Pox one. I will have to double check, but I think that since we got the MMR very late (he was almost 5) we don’t need any more of those. I also hope it is later in the summer because it will give him (and me) time to learn some German before we go. We are thinking of getting Rosetta Stone, but the prices are eye popping. Less than classes, but still expensive.

The interview we did that was supposed to air on Monday hasn’t aired yet. I have a feeling it is because the major news story around here took up wayyy more airtime than originally planned, because WE WON! ROCK CHALK JAYHAWK! Ok, so it isn’t “our” team, exactly. (probably 3rd on our list behind WSU and KSU), but it is still very, very cool. I don’t watch a lot of sports, but we tuned in for the finals. It was truly one of the best games I have ever seen. My husband was reminded last night that the geeky theatre person he married was a cheerleader in high school. lol. By the last half of the game, and through overtime I was unable to actually SIT to watch the game, and was up in front of the tv cheering. Zora, in her cuteness, got her little step stool and stood next to me, echoing every cheer and clapping along. It was really fun. Zach & Zane were even standing up watching by the nail biting end.

Now, in real life, yesterday Zane had his last hippotherapy session. Zach came along because he hadn’t seen him on a horse in person, and understood totally why I was so sad to see that go. Zora was unable to really handle it well because she wanted to be on the horses too. She kept trying to put on the helmets and head out to the ring. I finally had to take her out of the building and visit the stables next door to keep her screaming from startling the horses. She did get to pet a few horse noses and sort of brush a horse through the bars in the stables, so she was temporarily satisfied.

The hippotherapy ended much sooner than we were planning. The whole situation felt like we had been dropped in the middle of a soap opera and we barely knew the players. The board (I assume of the stables/farm) met and decided, for reasons that make no real sense, to fire the main person who started the program. (we think it might be because the head person wanted to keep it small and affordable to kids, and the board wanted to make money off of it). When they fired her, all of the therapists (except maybe one, last we heard) quit because of some of the policies they wanted to put in place. Last week, before I heard of any of this, I could tell something was off when they brought the wrong horse and the handler didn’t seem nearly as attentive. Now I know why. The teams there were very well trained to ensure the safety of everyone. The personality of the horses are taken into account in what they do with them, and the horses, to this point, were treated very gently (no spurs, no whips…more of a horse whisperer type management).

The new people think the horses should basically be interchangeable, and they want to streamline what the kids do…make the program “one size fits all”, and they want to reduce the number of people around the child and just have random handlers for the horses. They are hiring people that know about horseback riding (but more “cowboy” than “therapy”), but not about autism/CP/Downs Syndrome, ect, and are more about teaching riding than using the horses therapeutically. To top it all off, they sent out a passive aggressive little letter to all of the parents. I didn’t really know what was going on before that, but I was very unhappy with the whole, unprofessional, tone of the letter and started asking around to see what the heck was going on. After talking to several people, I don’t feel like it is a safe, nurturing place for Zane, and I decided we are done. For Zane’s sake, and the fact his OT was there one last time, we went ahead and had a last session where he knew it was the last one to help with the transisition away from it. If, by some chance, the group starts up someplace else (not sure if this is possible, but they have a well working team already formed and have been working together for many, many years) we will follow them there. Might be wishful thinking, but I am so sad to see such a good program implode on itself. Around here people don’t just leave jobs like that, and if the whole team leaves, there is something fundamentally wrong. I am not taking any chances.

In other news, Zane started the additional ST session that I was working to get him when the OT left Heartsprings, so that was good. Everybody, including the ST was tired from staying up too late to watch the game though. (I bet the coffee sales in Kansas went up dramatically this morning because everyone I saw today looked a little bleary eyed) Tomorrow we start up OT at her new office.

And finally, Zach had a big phone interview this afternoon. He felt like it went fine, but naturally keeps replaying “I should have said…”, but that is pretty normal. It is for the job that would have us moving to the west coast if he gets it. There are some great things about this job, but moving so far away would be challenging, especially with the cost of living being so much higher.

Zora is sick and cranky and hanging on me. It is day 2 of this and I am ready for the crankyness to END.

Zane has no therapy this week until Thursday evening. The university is on spring break, so there goes 2 speech therapies and Reading Explorers. Our OT is leaving heartsprings and I was suprised to learn it was our last session with her last week, and no replacement as of yet. (although we will see if insurance will pay for us to follow her to her private practice, even though it will be a bit of a drive), and the hippotherapy for today was cancelled last night for a mix of reasons (the main person either got fired or quit, one of the horses is lame, and I think our OT called in to cancel….and it rained today, so it would have been canceled anyway). So, it will be a long week for us.

I am starting to feel cranky too. *pout* With Zora not feeling well, it means we are not really able to go out as much either.

Susan Peters, one of the anchors for our local ABC channel was doing the ad. The first take Zane tried to take off his shirt, but he did ok after that. Echolalia and shooting a commercial in front of a crowd of Autistic kids can create some funny outtakes as a phrase gets echoed across several different kids in a wave. lol.